When Matthew was 9 months old, he was having a bath when his first seizure occurred. I had never seen anything so frightening, and it was happening to my son. The first one lasted for over 15 minutes. That was Spring, 1995. By the time he was 15 months old he was having seizures daily, tonic clonics, complex partials, absences and myclonic jerks. He had been formally diagnosed with uncontrolled complex epilepsy, only they couldn’t tell me what had caused it – it was just ‘one of those things’.
I was continually reading everything I could get my hands on regarding epilepsy, contacting every organization I could find, talking to whoever, where-ever, to try and get answers and find out information to help my boy. It was while I was on this quest that I first learnt about the existence of the Ketogenic diet.
When I asked the doctors about it, I was fobbed off and told that there was no real evidence that it worked and that it was very difficult to manage and ‘drugs are the better option.’ Matthew was 2 when I first asked about the diet.
At 6 Matthew was under Great Ormond Street Hospital and he had made no progress whatsoever. By this time I had watched the film ‘First Do No Harm’ which is based on a true story, about the Ketogenic Diet – so much of the story I could sympathise with, as Matthew and I had been through the same. Whenever I spoke to the doctors about him trying the diet I was always given the negatives:
* It was very difficult to manage.
* It was extremely unpleasant and unpalatable for the child.
* Although some success had been achieved with the diet, it was nowhere near as effective as drugs and it was a very ‘old fashioned’ form of treatment.
* Considering that Matthew loved his food so much and was in good health otherwise, did I really want to put him through all that for something that probably won’t work anyway – “you have to think of his quality of life Mrs. Williams”. – Thanks, more guilt, just what I needed.
Matthew was now coming up 8 and at a meeting with our consultant at Great Ormond Street, AGAIN I asked about the Ketogenic Diet and she told me about the clinical trial that Great Ormond Street were currently doing on this Diet and if I wanted, she would be happy to put Matthews name forward for it. I practically bit her hand off saying yes!!! It was my last hope there was absolutely nothing left to try and Matthew’s epilepsy was worse than ever.
After a very shaky start culminating in a hospital visit - we have never looked back. From having between 10 and 20 seizures per day, he now has, on average, 3 per week - some weeks we have none at all, some weeks we have slightly more – but we have NEVER gone back to the amount he used to have when he was just on medication.
Why should this diet be a last resort? I first asked about it when my son was 2 years old - it took me until he was nearly 8 to get him on it. He now has the best quality of life he has ever had. I know that he will always have special needs but the future now looks so much brighter for him, his sister and me - for us as a family.
So please remember Matthews story and the difference the Ketogenic Diet can make to a child's life and if anyone tells you that miracles never happen, please tell them from me, that they are wrong.
Attached is the latest photo of my boy – 15 years old and bright as a button – THANK GOD for this diet.